Hi all, this is my first post but I am in the 6th year of my condition.
Firstly, I am glad that there is more information around these days for us.
Secondly, I am also fortunate to be not too far away from Dr Edwards and the NHNN UCL of which I have spent a fair amount of time in and completed the multi discipline 4 week inpatient program and have been fortunate enough to have had my brain wave patterns studied ( an interesting finding ).
Also have been tried with most of the usual medication including botox.
My condition started after a medium type rta a bang to my head, swelling and everything else that comes with that.
I cant really say what I think is harder to deal with, either the headpains confusion and disorientation, a medical professional who thinks I am a drunk or the movement disorder, but then everyday is different.
I know roughly what works for me these days, and understand that we all have something in common, but mainly having a loving wife that has been though this with me, an understanding family, a gp that after a fair amount of harassment got me to Dr Edwards MD clinic and of course that man himself.
Thank you for your research, your patience, and your down to earth approach in helping me, over time I have got so much more of my old life back.